My Fatness Is So Much More Complicated Than I Can Take

Every illness blurs each line.

Shortly after learning that I have a rare adipose disease called lipedema, I read that about 90% of its sufferers develop eating disorders. In virtually any other medical condition that number would seem absurd, but having lived most of my life with this illness, I know firsthand that the correlation makes total sense.

Lipedema is characterized by “symmetric and circumferential increase in fat of the buttocks, hips and legs, affecting the arms in most, sparing the upper abdomen, trunk, feet and hands.”

A quick Google search is either depressing or repulsive--perhaps depending upon whether or not you have the disease.

Lipedema fat is different from overweight and obese fat. The horrible hallmark of lipedema fat isn’t just the trunk-like legs--it’s the feeling of helplessness since the fat does not respond to diet and exercise like simple obesity fat.

In fact, people with lipedema are now discouraged from even undergoing bariatric surgery unless they can “be under the care of a manual lymph drainage therapist before and after the surgery to avoid failure of the procedure to promote weight-loss, and risk of development of lymphedema.”

The facts swirl around my mind

Lipedema comes before obesity.

Obesity comes before or after the eating disorders.

Eating disorders happen in lipedema because nobody tells us why the fat won’t burn away. At least, not until most of us have suffered for decades.

I am in stage 3 lipedema. For several months now, I have been having pain in my legs and arms which is hard to define. Partly reminiscent of “pins and needles,” excessively fatigued, and strangely cold in an internal way. It’s 2am as I write this, but I can’t seem to get comfortable or forget the discomfort within my limbs.

So I write instead.


Lately, I am completely overwhelmed by the magnitude of my illnesses. On top of lipedema, I have polycystic ovarian disease, endometriosis, borderline personality disorder, depression, disordered eating along with binge eating disorder and chronic fatigue syndrome. Asperger's. And of course, obesity.

No expert can tell me exactly where one disease ends and another begins. The symptoms and interruptions all seem to bleed into each other.

I get so caught up in the fact that I don’t know what will happen when I change my habits. Will great efforts yield equally great results? I just don’t know. From what I've experienced, it takes enormous efforts on my part just for my health to reap tiny benefits.

Years ago, I lost more than 100 pounds. In fact, I did it twice--once in my mid-20s and then again in my early 30s. And of course, there have been countless losses and gains. But these days, I'm in a real rut.

400-ish pounds and deeply wounded about this body. Super self-aware in some ways, but wildly disconnected in others.


I keep taking 3 steps forward and 4 steps back. Or maybe, it's two steps forward and 1 step back. At any rate, I find myself all over the place. Never really going anywhere.

But there is only one thing that matters, I think.

I have got to try.

Forget trying to figure it all out. Forget trying to understand where one illness ends and another one begins.

I have to move past the fact that yes, life is unfair. Yes, I have a lot of cards stacked against me. No, I didn't ask for any of this or do much of it to myself.

But that doesn't matter.

Victories aren't won by taking it easy or complaining that I have it harder than somebody else. My health conditions don't change the fact that it's my responsibility to do my best.

To be my own hero.

Frankly, it doesn't even matter how I got here.

The point is that this is where I am. I need to make healthier choices for myself, and quit worrying about where everyone else is at. Or how far the changes take me.

I figure this is the real secret to living a good life:

To quit looking at what we don't have or can't have, and instead focus each day on whatever it is that we can do.